Category: Our Story

my role

Everybody has a skill a talent.. something that is special and unique about them. A way for them to give back..Everybody has a story to tell and I am able to tell my publicly. .. But at the center of it.. My truest calling.. now. I am a cancer mom.. but specifically one to a child that was on hospice and died.. one that is dead. And that’s where I am most useful. That’s where I can help.. it is my role and my place in this world.   At first it was parents with teenagers that were really screwing off.. I could talk to them from the child’s point of view.. I could share my story and my success in overcoming it. Then it became  infertility and adoption. I used to be good at talking to people and helping them through those darker times.. especially transition times.. during a[…]

twisted

I spend a lot of time, a few hours a week going to counseling or taking Jonathan to a session.. But if it helps its all worth it. I think for us we are doing this the best way we can.. and we happen to need the help to do it. My goal is that Jennifer’s death won’t be what defines us but was the catalyst to recreate us.. all of us. Something we didn’t need.. or want.. But something that did in fact happen to us. I have blue eyes.. I am 5ft tall. . and my daughter died. I want it to always be part of me.. part of us.. But not all of me, like it feels right now. It’s scary for me to realize that truly we are still just in the very beginning stages of that recreation. Last night Tony and I were talking about how much[…]

..its her ring…

There was this ring. The most precious ring I have ever owned. More than my wedding ring or engagement ring.. This ring that I once had. I wrote about a few times before.. I bought a bag full of costume jewelry for Jennifer at a garage sale. A little while later she showed me that it had a grown up ring in it.  I slipped in on and it perfectly fit me. It had 5 bumps down the middle. I kissed it and her.. and told her it represented the 5 loves of my life. My 4 children (one of which was still growing in my tummy) and their Daddy. I loved it immediately. And she loved me wearing it. But it was always hers.. she was allowing me to wear it. So every once in awhile she would take it back. The first time I thought it might be[…]

My no into yes

Its pretty amazing how one moment can trigger one memory.. that then triggers a landslide of them. I was at the CVS pharmacy waiting to pick up my prescription. I moved to the side where the toy aisles are and I remembered being on a phone call there.. standing right in that very spot. So incredibly mad. I was talking to a hospice nurse.. right when Jennfier was going to be getting on service begging for one seemingly simple answer. How can long can a little girl live with no food and barely any liquid. And I couldn’t get a answer. I was nearly yelling.. just tell me a number. How can you not give me a number?!?! Now I know why.. because there really isn’t one. They can last so much longer than you would ever even imagine. Jennifer was over 23 more days. .. I was so mad[…]

she moved

Words have power they have meaning. They can bring me to the depths of my pain. Thats good. But they can also help me .. and my kids.. find new ways to bring us above it. I spoke with another bereaved Dad. One who focuses on bringing the joy to kids with cancer. He shared something .. shared words with me that settled in. I will never change up completely the things I write to get out the gunk – the pain.. the genuine horror I live with daily. Because if I don’t it will take root in me. Take over me no matter how I try to keep it at bay. That is who I am. But I also can find ways to concentrate on the other portion when I speak in a loving way about my daughter .. in particular to my surviving children and the kids that[…]

guarantees

I almost never went to her room at night. I was too scared to wake her.. and after all I would see her the next morning.  No idea that it was a gift.  A privilege not a guarantee. I do it every night now with my boys. I kiss them and I tuck them in again. And I whisper to them. About the depths of my love for them and what I hope they are dreaming about. I hope that those quiet midnight moments make their way into their hearts and their memories. So they never doubt the depth of my love. There are no guarantees …. The promises you are supposed to be confident in telling your kids have been stripped away. I will see you soon I will never leave you Mommy’s here.. its ok.. We all lost our innocence when Jennifer died. Because I know .. I[…]

middle aged

Hindsight is 20/20 .. what a cruel thing that clarity can be. Nicholas is 3 now.  He got to be our families superstar for the day. Jonathan did the best at making it that way. After staying up to decorate like I shared here  he showered him with love and attention. It was quite incredible to watch him. A beautiful combination of the gentle and kind and giving person he is made to be and the loving and supportive big brother Jennifer taught him to be. i hope so much she is still teaching him. still finding ways to reach him and impact him Tony and I were both so proud of the way he was all day with his little brother.. genuinely excited for him and helping him in any way he could in earnest. So we thanked him profusely and shared our pride in him with him. I hope[…]

…but not really

Looking through the pictures for that last post really got to me.. About what pediatric cancer really looks like.. Its not just bald kids.. or swollen faces. Or feeding tubes and barf bags.. Often times there is something even worse that all of that.. being left behind.                 And then I get really angry. This is not the way its supposed to be. It is not the way it has to be. 60 kids were on that stage this morning. In just over a week. 8.5 days. That many children will die from cancer in this country.   7 a day. It is not rare. I am not alone. Far from it. Cancer is the number one disease killer of children. (national cancer institute) It is the number two killer of our kids. Number one is accidents.. which is such a broad term so[…]

swallow

Sometimes I find the changes we suddenly face so hard to swallow… Tomorrow we leave for our daughters Make A Wish trip. She loves Disney…so going to Disney World will be amazingly fun for her. But I think thing she is most excited for is being with our whole family together for the vacation. Our kids…they fight…they are after all siblings. But they love each other so much too. Jonathan insists that he be the one to push her in her wheelchair. And Jennifer seems to really like it. Of course I do too! Something got Jonathan sick on Friday night…and Tony a bit sick last night (but he is sure its food). Honestly though we have no way of knowing if the rest of us might get sick on the trip. We are a “rush” trip. Meaning her drs felt that we needed to go January at the latest[…]